Is anyone else on this med? LupanCatwoman
No but very curious how you do…keep us informed…good luck 
Christine, The FDA approved the IV drug Benlysta in March and I started with infusions in April. Initially, I was feeling much, much worse. I had an infusion Tuesday and have felt like I have energy since that time. I am scared to think this might really be working. The thought of NOT spending so much of my time in bed sleeping or resting is mind boggling. Not to mention having a minimal amount of pain. Time will tell—my rheumatologist says we will know for sure if Benlysta works for me by the end of the summer. It works in one out of three SLE patients without major organ involvement. Also, you cannot receive the med if you have taken some anti-cancer meds for SLE. I was very lucky that I fit the profile and applied for assistance through the pharmaceutical’s assistance program based on income. It took a lot of research and paperwork on my part (and my doctor), but I was willing to do the work in an effort to feel better. If you Google Benlysta you can learn more. All the best, Lupancatwoman
christine aiello said:
No but very curious how you do...keep us informed...good luck :)
I should be starting it this month. I’ll let you know how it works. Medications work funny on me so I’m sure its going to be an ad adventure!
Lupancatwoman,
Please let me know how you do with the Benlysta. What drugs are considered anti-cancer drugs? I took Trexall at one point, so does that mean that I can not take this drug?
Kim
Kim, I am not doing well on the Benlysta. Have had four infusions and seem to be sicker. You will have to ask your doctor about Trexall or Google it.... If Benlysta doesn't work for me it might for you as it works on 1 out of 3. I immediately developed Plantar Facilitate, a foot disorder which cause foot pain, my sister had this the whole time she had chemo, Anyway, I wuill take at least one more Benlysta and see what happens. I have only been on it 2 1/2 months. All the best, Lupancatwoman
I may be starting this soon, how was the first dose?
MIMI
I may be starting this drug this month. What can I expect? What side effects did you experience?
Lupancatwoman said:
Kim, I am not doing well on the Benlysta. Have had four infusions and seem to be sicker. You will have to ask your doctor about Trexall or Google it… If Benlysta doesn’t work for me it might for you as it works on 1 out of 3. I immediately developed Plantar Facilitate, a foot disorder which cause foot pain, my sister had this the whole time she had chemo, Anyway, I wuill take at least one more Benlysta and see what happens. I have only been on it 2 1/2 months. All the best, Lupancatwoman
How often do you have to take it?
Lupancatwoman said:
Kim, I am not doing well on the Benlysta. Have had four infusions and seem to be sicker. You will have to ask your doctor about Trexall or Google it… If Benlysta doesn’t work for me it might for you as it works on 1 out of 3. I immediately developed Plantar Facilitate, a foot disorder which cause foot pain, my sister had this the whole time she had chemo, Anyway, I wuill take at least one more Benlysta and see what happens. I have only been on it 2 1/2 months. All the best, Lupancatwoman
Mimi, have you started Benlysta yet? If so how is it going? I may be starting it soon.
Kim
Sarah,
Have you started Benlysta? If you have how did you do? I am kind of scared?
Kim
I am eager to know how this works
I will have my first treatment tomorrow. I’m excited and nervous!
Good Luck Jasmine! I pray it works very well for you, please keep me updated as to how it is & how you do… Suzie :0)
please keep me posted about it…
How are you feeling so far on the new med?
Well after almost two months of fighting with the insurance company I finally had my first treatment. Things went well with no adverse reactions. The actual treatment took about an hour and a half but I had high blood pressure when I came in so they gave me a blood pressure pill and I had to wait for it to come down. Guess I was more than a little nervous! My next infusion will be in two weeks then two weeks after that, then once a month. According to the nurse if this treatment is going to work I will see a difference in six to eight weeks. So we wait and pray.
So how are you doing now on the new drug? I start October 6th. I had to go and get a TB test before I can start. Can I go back to work after it is done? Or will I feel sick? Please let me know what to expect. I am real nervous and my mom keeps questioning me about the treatment. So I am turning to my friends here for answers.
Jasmine393 said:
Well after almost two months of fighting with the insurance company I finally had my first treatment. Things went well with no adverse reactions. The actual treatment took about an hour and a half but I had high blood pressure when I came in so they gave me a blood pressure pill and I had to wait for it to come down. Guess I was more than a little nervous! My next infusion will be in two weeks then two weeks after that, then once a month. According to the nurse if this treatment is going to work I will see a difference in six to eight weeks. So we wait and pray.
Kim and Everyone,
I was on Benlysta for several months without any serious negative issues....BUT....it didn't work for me so I stopped taking it about six weeks ago. It was an easy IV (one hour). My rheumatologist told me it worked (to relieve pain and fatigue) on approximately one out of three six women people, and unfortunately, I wasn't the one out of three. BUT, I am grateful for the chance to try it and I know some will have success with Benlysta. I am unable to work (I'm 59) so I can't address that issue (i.e. taking Benlysta and while working).
Let me know if I can answer any questions.
All the best,
Gail
P.S. I didn't have to take a TB test or any other drug with the Benlysta.